It is in the normal course of events that as our advanced prostate cancer progresses we will eventually end up dying from the disease. There will come a time when our doctors will no longer have any additional treatments or tricks up their sleeve, or we will just decide that we are done and wish to let nature take its course.
In December of 2010 we learned that Elizabeth Edwards was told that she had reached the stage where further treatment would not extend her life. She chose to continued only with hospice services to control her symptoms. She also chose to die at home surrounded by her loved ones.
The CNNhealth.com writer/producer Madison Park wrote an article about this, “Dying at Home, Surrounded by Family,” She said, “Next to picking a life partner or becoming a parent, there isn’t a more personal decision than how to die for those who get the opportunity to choose…. it’s a heavy consideration for terminally ill patients. For some, making the conscious decision to end treatment is tantamount to giving up or giving in. They worry about disappointing the people who care about them.”
She also said that more patients are choosing to die at home with hospice services so they can be made comfortable among loved ones in familiar surroundings. In her article, she quoted Dr. David Casarett, associate professor of medicine at the University of Pennsylvania:
“People in hospice want to use whatever time they have to live the best way they can. I don’t think it’s giving up. It’s making a careful choice. The easiest thing is to go after treatment after treatment, and say yes to whatever gets offered next. The bravest thing is asking yourself what’s important, who’s important, what’s best for you and your family and choosing hospice that way.”
When Ms. Edwards passed away Otis Brawlery, MD, Chief Medical Officer at the American Cancer Society said, “The courage, grace, and dignity that Mrs. Edwards has shown us as she faced her cancer journey is extraordinary. She has been and will continue to be an inspiration to patients, their families, and to the health care professionals who care for cancer patients.
As an individual with multiple cancers I have to honor the he way she faced the end of her life. I too hope that I am able to have the grace that she displayed.
It has to be a tough decision to accept hospice and supportive care, even though the fact is that for many cancer survivors hospice care is more likely to lead to a better quality and longer quantity of life than aggressive therapy.
HOSPITAL SETTING IS MORE STRESSFUL
Choosing the correct location where a person decides to die has a significant impact on the rest of their quality of life. Researchers at Dana-Farber Cancer Institute in Boston, Massachusetts, performed a prospective, longitudinal study of life at the end-of-life stage. They found that when a cancer survivor dies in a hospital room or in an ICU, their quality of life is far worse than if they die at home with supportive hospice services. The research also led to another unexpected finding: caregivers are at greater risk for developing psychiatric illness if the patient dies in the hospital or in an ICU instead of at home!
The study included seven different cancer centers. The study, which recruited 342 advanced cancer survivors and their caregivers from 2002 to 2008. Participants were followed until death, a period that averaged 4.5 months.
When the study subjects initially entered the study the researchers first interviewed the survivors and their caregivers, usually family members. The caregiver’s mental health was evaluated at the onset of the study to uncover any pre-existing psychiatric conditions. The researchers then met with the caregiver again within 2 weeks after the patient’s death for an assessment of the survivors quality of life and the amount of physical and psychological stress experienced during the last week of life. In situations where there was more than one caregiver, the investigators interviewed the person who was most closely involved with caring for the survivor during that last week of life. Six months later the researchers again met with the caregiver to evaluate the survivors last week of life. However, in addition to assessing the survivor’s mental health, the investigators also re-evaluated the caregiver’s mental health.
IMPACT ON CAREGIVERS’ MENTAL HEALTH
In a very clear manner, those who died at home with hospice services experienced a better quality of life and less physical and emotional distress than those who died in an ICU or in the hospital. The ICU proved to be a particularly devastating location for caregivers and patients alike.
The researchers found that post-traumatic stress disorder (PTSD) was diagnosed five times more frequently in caregivers of survivors who died in an ICU than in caregivers of survivors who died at home. The authors report that their study is the first to show that caregivers of psurvivors who die in the ICU are at a greater risk for developing PTSD.
Death in the hospital but not in an ICU also led to problems among families and other loved ones. These caregivers were more likely to develop prolonged grief disorder (PGD), which the investigators describe as “an intense and disabling form of grief which lasts more than six months.”
The startling fact is that most people who are dying of cancer would like to spend their end-of-life days at home. However, the sad truth is that 36% die in a hospital and 8% die in an ICU where they may experience painful invasive procedures.
Home hospice care that emphasizes relieving pain and encourages the a person to die in a peaceful environment. ICU care is often traumatic not only for patients, but also for their families and caregivers. Dr. Wright explained, “In the ICU and in the hospital, we’re trying to do everything we can to prolong people’s lives at the very end of their life. At home, there’s much more attention and focus on really addressing the symptoms patients have … probably a more holistic approach.” She cautions relatives and caregivers, “You may be at significantly higher risk for developing psychiatric disorders after losing someone in the ICU. And you should know to seek help if you’re experiencing disabling symptoms of grief or anxiety; that this may be because of what you witnessed at the end of your loved one’s life and not just a normal part of grieving.”
Alexi Wright, MD, Holly Prigerson, PhD, etal., Journal of Clinical Oncology
Joel T. Nowak, M.A., M.S.W.
I reply with a heavy heart to this article, my beloved husband of more than 40 years and a mere 62 years old did die in an ICU at Dana Farber /Brigham and Womens. It was not at all what we had planned for the end, as a home health and hospice nurse executive we envisoned a peaceful , pain andanxiety free transformation surrounded by family friends and pets. It was not to be. Gary required emergency spinal decompression surgery to preserve his mobility and eligibilty for a clinical trial of xl 184, he developed a dural tear which did not heal and required a second surgery to seal it. Lymph node swelling in his neck due to lying flat obstucted his airway and he had to be intubated for 48 hours until the leak sealed. We were assured that the tube could come out as soon as he could sit up, his condition continued to decline and we worked with the wonderful palliative care staff from Dana Farber to honow our wishes to get him home, the staff did not beleive he would make the trip home to cape cod once extubated so the ICU staff and palliative care staff did everything they could to make us feel like home and family. All tubes were removed, we dressed him in his confortable Cape Cod Cuffies sweats ,played music and surrounded him with love, he passed pain and anxiety free within an hour, they were right he would never had made the ride home alive. I did not want to leave him at the hospital and the ICU and Palliative Care staff worked with me and the funeral home to take him directly from ICU, no covers, no bags and I follwed him back to the cape.
Sometimes final hours are not in our control and we have to make the best of the situation, it was not what we planned butwe planned around major obstacles and hope he understands we did the best we could, he went into this surgery understanding the complications and for 3 weeks after the first surgery he was at home and pain free for the first time in more than a year, and for that we are grateful. Thanks to the ICU palliative care staff for being so caring , compassionate and flexible.
My deepest sympathy on the loss of your beloved. He was very lucky to have had your love accompany him on the journey. – Joel